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Monday, February 11, 2008

What are Curebies and Why are they Dangerous?

This wasn't the topic I wanted to write about today but time is short and I'm very busy and I already had this one prepared, so here goes.

What is a curebie?You are a curebie if any of the following ring a bell.

1. You think that one day, with enough funding, someone will invent a magic pill, therapy or operation that the kid can take which will make them Neurotypical (NT).

2. You think that you can simply change a kids diet, parents, proximity to power sources, TV or Game viewing/playing hours and they'll suddenly become NT.

3. You think you can make a kid NT by electroshocking them, beating them, locking them up or otherwise torturing them into normality.

4. You think that being Aspie or Autistic is wrong..wrong...wrong. A burden thrust onto you (a parent) which needs to be "fixed".

5. You don't think anyone would be happy the way they are unless they are NT.

6. All you want is for your child to be the same as everyone else's child.

7. You think that any money collected for autistic children should be funneled into research into finding a cure rather than being spent on improving their quality of life.

8. Your child's condition diminishes your love for him/her - you'd love them more if they were NT.

9. You're certain that Asperger's or Autism isn't genetic, it's caused by outside/environmental factors which can be cured.

Why are Curebies Dangerous?The main reason that curebies are dangerous is because they're usually willing to take any steps possible to convert their child to a normal one - even if there's risk to the child's health, longevity or mental state.

Curebie therapies are often quite nasty and many (most) of the doctors who support cure movements tend to fall into the "quack" category. In some cases, the curebie medical profession seems very similar to internet scams with the main aims being more monetary that social.

11 comments:

I'd love to agree that nobody ever deliberately hurts their children, but history disagrees strongly with this.

Ignoring Autism and Aspergers for a moment, there are plenty of documented cases of parents spanking their children to the point where their physical and mental health is at risk. Though it's not considered PC nowadays, it once was.

Back on topic, you can see parents putting their children through therapies such as Chelation, which has a high risk of Kidney damage and calcium depletion.

I'm curious how this might play out with an adult who hasn't (yet) been diagnosed with Aspergers. I have a very close friend with a lot of the hallmarks - relentless conversation without realizing they're not connecting, intense interest in a few topics that often go above others' heads, and other things that suggest he has never quite learned some of the cues most people use to carry on regular conversations and keep them from spiraling into debates or conflict.

He has maintained no real friendships from his past, and it's frustrating to watch him alienate new people he meets, without realizing it and then deciding it was their problem. I've mentioned Aspergers (having done a lot of reading on my own), but he feels such "labels" are only used as an excuse by average people to explain why others (particularly smarter people) are so different, and can therefore be marginalized.

I recently reached a limit with him, which has been very devastating, but I just felt that he needs to take some steps to acknowledge the situation and work constructively to finding a better way to deal with it, and in turn, perhaps give others a better understanding of him as well. He has some absolutely wonderful qualities, and it's a shame to see this wall between him and the rest of the world. Am I being reasonable, or just a "curebie"?

With kids, it's very difficult to draw the line between helping and changing. Even TEACCH, which is one of the most acceptable development programs, does contain elements which make my fists clench - and even parenting itself is pretty controversial, regardless of the kid's neurology. I mean, until you're 18, and perhaps even a little beyond, you are not treated as a responsible, worthy person with all due rights. Instead, you are made to feel inferior because "you're not the one who earns" - or at least that is what I felt.For example, social courtesies, such as greetings, etiquette and formal "panels". I still don't understand why are these things oh-so-necessary, as they hold no actual content in communication - yet as a child I was forced to use them ("because you need to learn this and that so you can be self-sufficient"). Nowadays my mother is more understanding and therefore I can afford not to use any "filler", and I'm doing just fine with my life (well, as anyone could do at the age of 18 with no degree yet). I even managed to have a part-time job - in a world where 85% of Aspies are deemed "unemployable" in some sort of statistic bullshit.On the other hand, there are things which must be taught to everyone - like that putting your fingers into the grinder is dangerous, etc. But even in these cases, I believe that aversion is not the solution. Demonstration, logical explanation might take ore time and attention, but in the long term, these method are far more beneficial.One part of TEACCH which did considerably upset me is "making the child able to enjoy playing", as opposed to stimming. Breaking news: stimming is enjoyable, and quite likely necessary for the spectrum-kid, and therefore shouldn't be fought against! Of course, you'll get weird looks on the playground when (s)he is just running in circles, flapping his/her hands, etc., but if it's his/her main way of stress relief and/or enjoying him/herself, who cares?! (Curebies do, meh.)And, as I can say by experience, the desire for social contact will eventually develop - it's just a question of time, so don't force it. (Besides, most aspies I'm acquianted with can relate to adults much more easily, so their problems diminish with growing up. But there are examples for the exact opposite - children forever. That makes me think that movie ratings and other conventional age barriers are pretty much useless when dealing with aspies - our mental age can be a lot more, or less, or otherwise unrelated to our physical age. I was said to be "30 in science, morals and theory, 3 in emotional and social reality" in elementary school!)

Ooops...that was quite extensive. However, I believe it can be just as useful, so no problem.

What really ticks me off is the people who think that autism/Aspergers is something terribly, terribly bad that NEEDS to be cured. My daughter is an aspie with severe ADHD and despite all her difficulties, I would NEVER change the way she is: her differences are an integral part of her beautiful personality, and I love every part of her. Curebies treat autists like mutant diseased freaks, and it makes me so angry and sad for them that they can't see the beauty of neurodiversity.

hi Gavini like your blog & your insight! i have a child with autism aged 9. obv i disagree with the poster about the evil comment...but my son has his moments...& a handful is exactly how i do describe him!! meltdowns are an ongoing distress for both of us...but while my son bounces back after the 'calm' i'm left emotionally & physically drained...but i digress...

wanted to say love the 'are you a curebie??' list haha...v true & v scary ppl they are too. met a few here & there on forums over the yr & avoid them like the plague!! v sad silly ppl...acceptance is key!

in fact acceptance is not enough i will only be satisfied when society recognises that the unique perspective of a person with autism or AS is as valid as the NT perspective. it is different but not less than...

as for ppl not being inherently evil...i'm afraid i have to disagree with you there...ppl with Antisocial Personality Disorder - known also as sociopaths/psychopaths are born without a conscience, devoid of compassion or empathy & lacking the ability to form emphatic concern for their fellow beings. such a personality type often displays violent & manipulative behaviours...leading to evil acts. so yes i would say that they are indeed born evil.

as for the whole nature/nurture aspect. for me nature always wins out. not all those abused become abusers & not all abusers were abused. also not everyone from a dsyfunctional family goes on to abuse. there is another factor beyond past experience & family upbringing...nature...we wonder how such ppl can cross 'the line' but i believe thee are some ppl who start from the other side of the line to begin with...you can spot them in childhood...they'll usually be the ones tying fireworks to the cats tail.